I hope you are having a good holiday weekend. I am a 41 year old female with multiple conditions. I have ACM/Syringomelia/Trigeminal Neuralgia/Narcolepsy, spinal stenosis and Arachnoiditis.
I have undergone Gamma Knife surgery for the Trigeminal, which worked, but the nerve is now regenerating. I have undergone decompression/C-1 laminectomy/duraplasty for the ACM/Syringomelia, which also helped, but I am now getting much worse. I have been fused on two levels, C-5/6 and 6/7 for spinal stenosis and for an original fracture of the neck. This also helped.
When my neurosurgeon opened my brain for the decompression/duraplasty he discovered arachnoid adhesions/lessions. He removed numerous arachnoids and my arachnoid covering was distended and discolored. Due to my history being 19 years long, I have undergone multiple rhizotomies, nerve blocks, myelograms, angiograms, spinal taps not to mention the surgeries and radiation in attempts to aleviate the pain.
Now, I believe that in attempting to relieve, it may have caused the arachnoiditis in my brain.
I am experiencing intense burning pain in my hands and feet. My legs and arms have considerable spasticity, they are stiff and weak and very painful. I am having some visual changes, blurring and loss, along with bladder control and urgency issues. I again have tremendous facial pain, nausea and extreme fatigue. I can not walk far, as the pain is unbelievable. I also have headaches that I could never begin to describe. I have been to the emergency room for injections of demerol twice in the past 3 weeks.
My neurosurgeon states that my fourth ventrical's flow is minimal, and blocked with scar tissue.
I would appreciate any information on arachnoiditis that you could give to me, being that most of the information that I can find is on 'A' in the spine, mine being in the brain. Does it always progress? Do I live with the adage, do as much as I can now, or should I slow down, to slow down the progression? Is this terminal? Since I do grow the scar tissue, would further surgeries seem to not be the answer?
Thank you so very, very much for your time, and I apologise if this was too long.